Wednesday, September 25, 2019
So today was pulmonology. She'll start a bunch of meds to help with allergies/asthma. The hope being to give us the most accurate information from the sleep study in November. No one doubts she is desating at night. I'm still worried about getting the test performed. Will Bella cooperate? She didn't in August. We now attend a special therapy once a week just on medical trauma, hoping to lessen some of that fight/flight response to medical equipment and personnel.
Doctor noticed clubbing of her fingers. Why hasn't anyone called it that before? (Yes, I am a little annoyed here.) We went through a whole series of testing for Juvenile RA because of her fingers and toes. And now, one year later, those same fingers and toes are showing one of the evidences of her chronic hypoxia. I'm so afraid. All of this compensating she has been doing for all of these years, what is it doing to her body? And when is her body going to decide to scream for some relief? And will she survive that? So I am working with ENT, Sleep Specialists, and Pulmology, and the medical trauma therapist to get to the bottom of this. Everyone keeps mentioning her heart, so I may have to rope in Cardiology as well.
ENT doesn't think she'll tolerate bi-pap if she needs that. She mentioned she was afraid we'd have to go to the trach. Pulm says she's right, if she doesn't tolerate the bi-pap, it's a trach. But let's not jump the gun. I really, really, really don't want to go back there. At all.
To keep it real, here is how we deal with it - we put on a brave face and we smile :)
Dr. Bella, what she calls herself while we wait for doctors.
Tuesday, September 24, 2019
3 T sugar
2 1/2 teaspoon salt
1 package of yeast
1 cup warm water
2 Tablespoons soft butter
1 1/2 cup salt rising starter
1 extra large egg
1 Tablespoon water
In a large bowl, combine 1 cup of flour, sugar, salt, and dry yeast.
Add milk, butter and salt rising starter.
Slowly mix in the additional 3 3/4 cups of flour.
Knead dough for 10 minutes.
Cover with oil and a wet towel and let rise until doubled.
Beat down, shape into desired loaves and let rise until doubled.
Brush with an egg wash and bake 375 for 30 minutes. or until pounding on loaf creates a hollow sound.
Starter: After use, feed the starter with one cup of water, 3/4 cup of flour, and 1/4 cup of corn meal
When I bought the starter, it came with this recipe and these instructions:
For starter add two cups of warm water to the enclosed bag mix.
Place in a container and cover loosely. Allow fermentation to occur for 24 hours.
Wednesday, August 14, 2019
Kai had two activities – a summer STEM camp at KSB and BELL Academy.
Alex went to ESY (summer school) at Churchill Park.
Joy and Bella went to three camps – Camp Rauch, Vacation Bible School, and Derby Dinner Musical Theater Camp.
Liz went to Alaska on a cruise with my parents, to EFY, and to Youth Conference in Nauvoo.
Jes went to Japan and was able to find a job here in town that she can continue once she goes back to EKU.
All the girls and Dad went to Houston for a week to my parent’s Lake House.
I had detailed lists and calendars. I prayed a lot. Summer with my specific population is tricky. Routines rule and Mama can’t be a teacher, 2 aides, janitor, nutrition staff, and various therapists. There is a reason school is so awesome – there is a team of highly qualified individuals working with my babies and giving each other breaks.
Anyway, I read and pondered this scripture every morning to get me through:
D&C 68:6I am grateful I had that to ponder each morning and remind myself that I’m not alone and He and I are in this together.
Wherefore, be of good cheer, and do not fear;
for I the Lord am with you, and will stand by you;
So here I am on the other side of summer, grateful. Grateful that Alex got into summer school last minute. Grateful that Kai got into STEM camp last minute. Grateful that Musical Theater Camp had an employee from Down Syndrome of Louisville at their camp to make it accessible and successful for the girls. Grateful we made it. Grateful all of our surgeries went well. Grateful that we have good doctors who look after my kids.
Yay for school!!!
Saturday, August 10, 2019
2 cans green beans - French
1 onion and 2 cloves garlic, some ginger
1 cup chicken broth
Saute onion, garlic, and giner.
Add shrimp and cook until pink.
Add green beans and broth.
Cover and simmer for 5 minutes.
Thicken with cornstarch.
Serve with rice.
1 cup cooked angel hair pasta
1/4 cup diced onions, clove garlic chopped browned and cooled
1/2 avocado sliced
1//4 cup toasted sliced almonds
2 chopped green onions
4-5 cooked shrimp
Mix together pasta, onions/garlic mixure, green onion and avocado. Mix with Italian dressing. Place shrimp on salad and then sprinkle almonds on top.
12 oz mushrooms, sliced
2 T oil
2 shallots, minced
2 cloves of garlic, minced
1 pound of ground bef
14.5 can of stewed beef, undrained
8 oz of tomato sauce
2 t of dried basil
1/2 cup heavy cream
1/2 cup Parmesan cheese, divided
Cooke pasta. Heat oil in large saucepan over medium heat. add shallots and garlic, saute for 2 minutes. add mushrooms and beef. Cook until beef in browned. Stir in tomatoes with juice, tomato sauce, basil and cream. Simmer for about 5 minutes. Remove from heat and add cooked pasta to saucepan. Stir in 1/4 cup Parmesan; mix well. Spoon mixture into greased casserole dish and sprinkle with remaining Parmesan cheese and then bake for about 15 minutes (covered). Uncover, backe until cheese is melted about 10 minutes.
2/3 cup oil
1/3 cup ketchup
1/3 cup white wine vinegar
1/3 cup chopped green onion
1/4 cup sugar
2 teaspoons Worcestershire sauce
Combine in a jar, Shake to mix, Chill for 2 hours. (I don't)
11/2 pounds fresh Spinach (one bag)
5 slices bacon
8 ounces bean sprouts
1 can (8oz) water chestnuts, drained and sliced
1/2 teaspoon salt
1/4 teaspoon pepper
2 large eggs, hard boiled and sliced
Cooked chicken, almonds, blue cheese, goat cheese
For the salad, wash the spinach well. Trim, discard tough stems. Tear leaves into bite sized pieces. Cook bacon until crisp; crumble. Combine spinach, bean sprouts and water chestnuts in a large bowl and toss to mix. Sprinkle with crumbed bacon.
Pour the dressing over the salad and toss to mix well. Season with salt and black pepper. Slice the eggs and arrange on top of the salad.
dried herb - basil, dill, or rosemary
Preheat to 375. Peel carrots and slice into long, thin strips.
Place in gallon bag. Add just enough oil to coat carrots and add a couple taspoons of heb to bag.
Close bag and shake.
Place on cookie sheet ina single layer
Bake for 15 to 20 minutes.
1 large onion
1 bunch of green onions
2 cloves minced garlic
4 stalks chopped celery
1 loaf French bread, dried out a little
1 pint oysters (reserve juice), chopped fine
salt and pepper to taste
Combine. Stuffing should be moist before cooking. Season to taste. Place in large baking dish and bake at 350 for one hour
1 can chicken of chicken soup
1/2 stick butter
1/2 pint sour cream
1/4 cup green onions
1 cup grated cheese
2 cups corn flakes
Combine all ingredients into a large casserole dish.
Melt butter and coat corn flakes
Top casserole with cereal.
Bake for 30 minutes at 350
1/2 cup diced onion
1 garlic clove, minced
8 ounces of cubed cooked ham
1/2 cup shredded green cabbage
2 cups sliced carrots
1 bay leaf
1/4 teaspoon caraway seed and pepper
2 cups water
2 packets instant beef broth
1 tablespoon cornstarch, dissolved in 2 tablespoons of water
In a large pot, heat butter until bubbly and hot; add onion and garlic and saute. Add ham and mushrooms and saute for 2 minutes. Add cabbage, carrots, bay leaf, caraway seed and pepper and continue sauteing for 5 minutes. Stir in water and broth mix; bring to a boil Reduce heat, cover, and let simmer, stirring occasionally for 30 minutes. Stir in dissolved cornstarch and let simmer, uncovered until mixture thickens about 5 minutes. Remove bay leaf before service.
5 cups chicken broth
4 tablespoon butter
1 large carrot, sliced
1 medium onion, chopped
\2 stalks celery stalks, chopped
1/4 pound fresh mushrooms, sliced
2 tablespoons flour
1/4 teaspoon salt
1/4 teaspoon white pepper
1 1/2 cups chopped chicken
Combine 2 1/2 cups chicken broth and wild rice in saucepan. Bring to a boil over medium high heat. Reduce heat to low; simmer, covered until rice is tender. about 1 hour. Drain and set aside. Melt butter in saucepan over medium heat. Add carrot, cook and stir for 3 minutes. Add chopped onion, chopped celery and sliced mushrooms cook and stir until vegetables are tender, 3 to 4 minutes. Remove from heat. Whisk in flour, salt and white pepper until smooth.
Gradually stir in remaining 2 1.2 cups chicken broth. Bring to a boil over medium heat; cook and stir until thickened, about 1 minute. Stir in chicken. Reduce heat to low and simmer, uncovered until soup is heated through, about 3 minutes. Spoon 1/4 cup cooked wild rice into each serving bowl. ladle soup over rice.
2 cup milk
2 egg yolks
2 egg whites
1 tsp baking powder
1 tsp salt
1 TBSP sugar
4 tsp oil
Beat the egg white until stiff then set aside.
Mix the milk, flour, egg yolks, baking powder, sugar and salt in a bowl until smooth.
Stir in the oil Fold the beaten egg whites into the batter carefully until just blended.
Pour spoonfuls of the batter onto a hot griddle.
1 cup milk
1/4 cup oil
1 1/2 cup flour
1/2 cup sugar
2 teaspoons baking powder
1/2 teaspoon salt
1 cup blueberries
Beat egg, add milk and oil and mix well.
Mix in other ingredients. (except berries)
Mis just until moistened. Fold in berries.
Fill greased muffins cups 2/3 full.
Bake 20-25 minutes at 400.
6 tablespoons flour, divided
1 teaspoon salt
1/2 teaspoon black pepper
1 1/4 to 1 1/2 pounds chicken tenderloins
4 tablespoons butter, divided
6 medium mushrooms, cut into quarters
1 cup chopped onion
1/2 teaspoon dry mustard
2 cups chicken broth
1 cup sour cream
1 teaspoon ketchup
1. Cook the noodles, drain, cover to keep warm
2. Mix 4 T flour with the salt and pepper in a large bowl and mix well. Add the chicken and toss to coat.
3. Heat 2 T butter in a large skillet over medium heat until melted. Cook chicken in the butter. Stir in mushrooms and onion. Cook for 4 minutes. Remove chicken and veggies with a slotted spoon. Reserve juices.
4. Add remaining flour and butter and the dry mustard to reserved pan juices and mix well. Gradually stir in broth. Cook for 3 minutes. Stir in sour cream and ketchup.
5. Return chicken and vegetables to the skillet. Cook, until heated through. do not boil
1/2 teaspoon thyme
1 teaspoon garlic powder
1/2 teaspoon onion powder
salt and pepper
1/2 cup plus 1 tablespoon of water, divided
1 tablespoon cornstarch
2 tablespoon parsley
1 tablespoon oil
In a skillet, heat oil over medium heat. Add chicken and cook 10 minutes or until lightly browned, turning once. Combine thyme, garlic powder, onion powder and salt and pepper; sprinkle over chiken. Remove chicken, keeping warm and add 1/2 cup water to the skillet, using a wire whisk to scrape the pan and get up all the browned bits. Bring water to a oil, add chicken back in; cover, reduce heat and cook 10-20 minutes depending on thickness of chicken, until chicken is done. Remove chicken from skillet. Combine cornstarch and remaining 1 tablespoon water. Add to pan juices; cook until thickened and translucent, stirring or whisking constantly. Pour sauce over chicken and sprinkle with parsley.
1 cup yellow corn meal
1 cup all purpose flour
1/4 cup sugar
4 teaspoon baking powder
1/2 teaspoon salt
1 cup milk
1/4 cup oil
Sift together cornmeal, flour, sugar, baking powder, and salt into bowl.
Add egg, milk and oil. Mix thoroughly.
Bake in greased 8 inch square baking pan in preheated over 425 for 20/25 minutes.
1 3 ounce package cream cheese
1/4 cup margarine or butter
2 cups packaged biscuit mix
1/4 cup milk
1/2 cup jelly
Cut cream cheese and margarine into biscuit mix till crumbly. Add milk, stir till mixed. One lightly floured surface, knead dough 10 to 12 strokes. One waxed paper, roll dough into a 12 x 8 rectangle. Place onto baking sheet. Place jelly down the center of dough. Make cuts toward the center at 1 to 2 inch intervals. Fold strips alternately over filling. Bake in 375 oven for 20 to 25 minutes or till golden. Drizzle with Powdered Sugar Glaze. Serve warm.
Powdered Sugar Glaze
In a bowl, stir together 1/2 cup powdered sugar, 1/4 teaspoon vanilla, and enough milk to make a drizzling consistency (1 to 2 teaspoons).
1 can of condensed milk
1 teaspoon of cinnamon
1/2 teaspoon ginger
1/2 teaspoon of nutmeg
1/2 teaspoon of salt
Whisk together ingredients. Pour into crust.
Bake for 15 minutes at 425 and then
bake for 35-40 minutes at 350 till knife comes out clean.
1/2 cup milk
1 teaspoon soy sauce
1 dash pepper
4 cups green beans
1 1/3 cup fried onions
Mix all together, reserving 2/3 cup onions.
bake at 350 for 25 minutes.
Stir, Add the remaining onions to the top.
Bake 5 minutes
Friday, June 21, 2019
It was interesting to me to watch and feel each different little community. We stopped to grab a treat at the bakery across from KSB.
As we waited for the program to start, Alex was getting really agitated and restless and NOISY! I was afraid, not scared, but afraid his behavior which was so opposite from the morning was trying to tell me something. I was trying to keep him quiet (not working) but also listen to the program and Kai's part (precious). Miss Patti, one of his aides from last year, offered to take him outside so I could listen (Thank you! Yes!!) He came back in after a while, and sat in a chair beside me. The program was over and we were talking and I looked down (just felt weird) and he was having a seizure - drool, stiff but with a slight tremor, and totally gone. It lasted about a minute and then he curled up in my lap and went to sleep. I'd say about an hour later, he had recovered. He wasn't totally up to running and jumping, but he was moving and making sounds again, so we left.
About an hour or two later, he came into the room and curled into my lap and went to sleep. There is a certain position he wants - because he's weak and can't hold himself up. An hour later, I was tired, so I laid him down on the couch. He didn't wake up. Occasionally he would move, but he would make these smacking noises with his lips, teeth, and tongue (hard to explain) and then go back to sleep. So then I started worrying. Was he seizing? Was he in status again? Another hour passed and finally he woke up.
So it was a long afternoon. The new med worked for three days. Sigh. What is going on in my baby's brain?
Thursday, June 20, 2019
Wednesday, June 19, 2019
I was grateful to hear that song today. This morning before the bus picked up Alex at 6:45 AM, I had already steam cleaned a quarter of the main floor of my house, and then finished cleaning up after he left. Sigh. Kai even agreed - "Stink!" But that song reminds me of where my perspective should be.
So today I am so grateful for washing machines - we don't have to wash laundry by hand anymore!
Sprays and powders that add a different smell to the laundry and room! Steam cleaners! Essential oils! That I only have carpet on my stairs, and that we got the good carpet that cleans up well! And for the knowledge that while this is our sweet Alex now, it won't always be. He is a sweet, funny boy in a body with a brain that works quite differently right now. One day that brain will be perfect! (from my reading last night in Mosiah 16) Until then, I cherish the boy I have. Love ya, Alex.
Today I heard this song:
The line that jumped out to me was "You guard my soul." I was just struck. One of my daughters is annoyed that the answer to all of the questions we ask her during Family Scripture Study or at church are always the same - read your scriptures, say your prayers, go to church, blah, blah, blah. But that line, you guard my soul, reminds me that as we do those basic Gospel principles we put ourselves in a position for the Lord to have influence in our lives (again a principle from Mosiah 16). What a comfort! What a blessing! Life happens. Trials come. But He will walk with us and hold us if we allow Him to, and part of that is doing those things that invite Him to be with us. Grateful for those days that I chose to follow Him, and He guards my soul.
Tuesday, June 18, 2019
Turpins still came over for Sunday dinner, which was incredibly awesome, by the way. Sunday night Alex’s new ESY teacher and I talked about all things Alex (thank you Ms Moss! This Mama was about to have kittens!). Monday Kai and I ran errands, WalMart, Dentist, Bank, Haircut, UPS store, and library. Why do I record that? Because that’s a LOT of transitions for this guy - and he was awesome! Tuesday both boys went to school. KSB is having a one week STEM camp and a spot opened up for Kai.
Saturday, June 15, 2019
We decided Kai would stay with me. He doesn’t do well with new and unexpected changes in routine. The family leaving was hard on him. He had a meltdown, but settled down after a while. He and his Grandpa have a special relationship. Gary and Sandi kindly came over and spent some time loving on our boy. He’s fine and got to talk to everyone on the phone a couple of times. It was sweet.
So Day One of vacation is in the books. I spent the day cleaning up after the boys. The travelers traveled. (That’s a long drive!!)
Thursday, June 13, 2019
He is adespised and rejected of men; a man of sorrows, and acquainted with grief; and we hid as it were our faces from him; he was despised, and we esteemed him not.
The phrases "we hid as it were our faces from him" and "and we esteemed him not"
kept floating around in my head. I thought about my Savior and wondered if I was turning to Him as much as I could be, should be. And decided I probably wasn't.
The next morning (this morning) I read this from a group I follow on Facebook:
It was noon, and I opened the freezer.
“You reached out to ice cream before you reached out to me.
But you really deserve Jesus.”
The thought didn’t fill me with guilt.
It brought relief.
And made me pause.
“Grace is not our booster engine that kicks in once our fuel supply is exhausted. Rather, it is our constant energy source. It is not the light at the end of the tunnel, but the light that moves us through the tunnel. Grace is not achieved somewhere down the road. It is received right here, right now. It is not the finishing touch, it is the finisher’s touch.” Brad Wilcox
Wednesday, June 12, 2019
It seems it's time to start blogging again for the same reason. Because my life seems hard right now, and I need to prove to myself that my family is good and we are fine, despite our challenges.
Not the kind that people talk about. Not the kind where the child knows everything about a subject. Not the kind where the child needs social stories to be able to handle new situations or changes in routine. Not that autism.
In my mind, there are three autisms - high functioning, then what people think about when they hear autism, and the severe kind ... the kind Alex has.
We have the sticker on our car. We go to the occasional autism activities - for the other SN kids in my family, but Alex is always left at home. And he doesn't care. He doesn't notice. He couldn't care less. It's not like he's dissing the group. It just honestly doesn't even come near his world or enter his mind that there is more out there. His world is spinning and swinging and banging and putting everything in his mouth. His world is his cookies and his chew clothes.
And then there's EPILEPSY.
Which has been killing us over here lately. The other day my 16 year old was bagging my son! (translation: she was using an ambu bag to force air into his body while he laid on our kitchen counter. His 20 year old sister was timing the seizure. His 18 year old sister holding him on his side because he was salivating so much there was danger of his saliva going into his lungs. Where was Mom? On the phone with 911.) My big kids can go from self absorbed, doing their thing to totally focused on a small seizing brother instantly. They were trained in the school of life how to care for him. My 12 year old asks if we are going to have to call the fireman whenever Alex gets sick. (because the fireman are just around the corner and respond to our 911 calls very quickly.)
Alex used to have long scary seizures, but very infrequently. Now he has multiple seizures a day. They are short, but they leave him having to sleep them off for several hours.
Which brings us to our newest normal:
Periods of autism, followed by postictal Alex, followed by autism.
I am tired, so tired.
There is another side to Alex that if I'm being 100% honest, I have to record.
Alex is a funny and loving child. He delights in his toys - anything that makes noise. His laugh and smile can light up the room! And after he's had a seizure, as well as other times (I think he needs the deep pressure input), Alex cuddles. And it's the sweetest thing. And he loves it when you repeat his sounds! He has learned a song, "Are You Sleeping?" and he LOVES it when you repeat it after him. Fortunately, it's a repeat kind of song:
Are you sleeping? Are you sleeping?
Brother John? Brother John?
Only he doesn't use words, but he makes his noises and we know it's that song.
And he can be taught. If I say, "Brother, pray time!" He puts those little hands together so fast - and it's precious beyond words!
Sunday, January 27, 2019
I was able to go to Sacrament Meeting today. What a blessing! I left feeling renewed physically and spiritually. How grateful I am for the commandment to meet together oft - cause sitting in a room with that many people is not something I would naturally seek. But I was so blessed to be renewed today.
Thursday, January 24, 2019
President J. Reuben Clark Jr. said: “I believe that our Heavenly Father wants to save every one of his children. . . . I believe that in his justice and mercy he will give us the maximum reward for our acts, give us all that he can give, and in the reverse, I believe that he will impose upon us the minimum penalty which it is possible for him to impose.”
(J. Reuben Clark Jr., in Conference Report, October 1953, 84.)
When I was a child I often had [a] toothache, and I knew that if I went to my mother she would give me something which would deaden the pain for that night and let me get to sleep. But I did not go to my mother—at least, not till the pain became very bad. . . . I did not doubt she would give me the aspirin; but I knew she would also do something else. I knew she would take me to the dentist next morning. I could not get what I wanted out of her without getting something more, which I did not want. I wanted immediate relief from pain: but I could not get it without [also going to the dentist].
Our Lord is like the dentist. . . . Dozens of people go to Him to be cured of some one particular sin which they are ashamed of . . . or which is obviously spoiling daily life. . . . Well, He will cure it all right: but He will not stop there. That may be all you asked; but if you once call Him in, He will give you the full treatment. . . . “Make no mistake,” He says, “if you let Me, I will make you perfect. The moment you put yourself in My hands, that is what you are in for. Nothing less, or other, than that. You have [free will], and if you choose, you can push Me away. But if you do not push Me away, understand that I am going to see this job through. . . . I will never rest, nor let you rest, until you are literally perfect—until my Father can say without reservation that He is well pleased with you, as He said He was well pleased with Me.”
And yet—this is the other and equally important side of it—this Helper who will, in the long run, be satisfied with nothing less than absolute perfection, will also be delighted with the first feeble, stumbling effort you make tomorrow to do the simplest duty. As a great Christian writer (George MacDonald) pointed out . . . “God is easy to please, but hard to satisfy.” . . . On the one hand, God’s demand for perfection need not discourage you in the least in your present attempts to be good, or even in your present failures. Each time you fall He will pick you up again. And He knows perfectly well that your own efforts are never going to bring you anywhere near perfection. On the other hand, you must realize from the outset that the goal toward which He is beginning to guide you is absolute perfection; and no power in the whole universe, except you yourself, can prevent Him from taking you to that goal.
Saturday, November 24, 2018
So this week was White Cane Day. The boys came home with these cute canes they made from white pencils.
Another appt for Bella – this time Rheuhomology (however you spell that) – more selfies for the wait
The doctor ordered all kinds of blood tests. She was so happy to wait before hand, but then the blood draw was terrible!! They try so hard, but four adults working on one little girl – it just makes my heart sad. I promised her pizza for dinner, so off we went to Domino’s where they made it all right in front of her. They were so sweet!
Fall has been so beautiful this year! It literally causes me physical pain. Jason thinks that is so weird, but I just see it and it’s so beautiful and I know it’s all just going to be gone soon. So I take lots of pictures, but it never captures what I see. Life lessons? Just live it and love it, I guess!
Grandma and Grandpa Turpin are back from their trip to New York. We sure missed them! Especially Kai! He just LOVES his Grandpa – Yaya!
Sammi’s beautiful banana pudding and some yummy cookies
Cute Benny at therapy
Bella and Joy’s teacher is an artist – in addition to being a fabulous special ed teacher. They are always painting and creating – I love it!!
Kai and Ellie both love chips!
Not pictured in this week:
My visit to Joy’s middle school for next year. I called and asked for a tour. It seems like such a wonderful school. They cook something every week. They go out into the community every week. They go out to eat in the community every month. In addition to working on their goals and academics. I got to meet most of the teachers (there are four) and see the classrooms. Ugh, double ugh, super ugh. I LOVE the girls’ teacher so much. But he tells me Joy cannot stay in his class for the next six years until she graduates. (CRY!!) He tells me she is ready for junior high, but I”M NOT!!!
The very next day was the girls IEP meetings. Went well. Two IEPs done in an hour and a half. This team knows these girls as well as I do. I love that they are with this team. I am so grateful for their opportunities. I just couldn’t ask for more!
And another session at the temple. Grateful that it’s part of my routine now!